Reunited

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Categories Birth Stories, Breastfeeding, Development, Formula, Infants, NICU, PrematurityTags , , , , , , 11 Comments

I got the best news in a long time today. A college friend’s twin boys were reunited at 2 months old. Her second NICU baby got to come home from the hospital, 7 weeks after his brother.

In the middle of the joy I felt for my friend, though, I felt an upwelling of the sadness, anger and helplessness that tainted the joy of my own babies’ release from the hospital, over 5 years ago. Homecoming is one of the ways that the NICU experience can differ for parents of premature multiples in comparison to preemie singletons. Many twins and triplets are released from the hospital simultaneously, but many are not.

Our daughters were born 7 weeks early, but had few problems apart from their small size. J had a hole in her heart, which eventually resolved itself, and M had a facial cleft that turned out not even to require surgery. Neither of these conditions required hospitalization, so they were textbook “feeder growers,” newborns who were hospitalized until they had fattened up enough to maintain their own body temperature and had the strength to suck enough nutrition to keep them healthy.

Our girls didn’t need any assistance breathing; they’ve been verbal and long-winded since the start. They were keep in warm isolettes, and fed a mixture of high calorie formula and my breast milk through feeding tubes inserted through their noses and threaded into their stomachs. Every three hours came a diaper change, weighing, blood sugar measurement, temperature measurement and feeding. We watched every number as they rose and fell, and I promised myself I would take notes when they got home so as not to double feed one baby and starve the other. J and M were cared for by the same nurse, so their schedules were offset by 15 minutes. One benefit to having NICU babies was that they were on a clockwork schedule by the time they came home.

There were 3 criteria to be met, we were told, before the girls could come home. They had to weigh 5 lbs (2.25 kg), be able to maintain their own body temperature, and take 8 meals in a row by mouth, drinking at least 31 mls of formula/breast milk each time. Every now and then, when J asks for her “warmed up milk, please,” at breakfast or dinner, I wonder at the way she guzzles 8 oz of milk down and think back to the days I tried to get her drink 1 oz by force of will alone.

We wanted all the girls’ energy to go to growing at first. Somewhere in the first week, I think, they were introduced to doll-sized bottles. It took a few tries to get them to suck, first 1 ml, then 3, more and more each meal. They finally made it up to 31 mls at a time, but couldn’t keep it up two meals in a row. It was just too much work.

M couldn’t finish her bottle at every feeding, but she made an effort. Once, I was even allowed to let her suckle at my breast, although the nurses took her away before she exhausted herself. J was less predictable. She’d suck like a champ and then suddenly get distracted, seemingly more interested in playing with the bottle than drinking from it. Two weeks in, she broke our hearts by refusing two meals in a row and being put back on her feeding tube. It was the only time I saw my husband so upset that he couldn’t stay in the NICU to monitor every last detail of our babies’ care. A friend took him out for a beer.

When our girls were 2 weeks old, the hospital staff pronounced them to be the healthiest babies in the NICU. They could afford to be downgraded to a less fancy-schmancy NICU within the same hospital network. We talked it through and agreed to free up their beds. However, when the paperwork arrived, we were asked to sign a waiver releasing both the hospitals and the ambulance service of responsibility for the babies during their transport. There was no way we were signing that, so the girls stayed put.

Two days later, M was ready to come home. She hadn’t quite made the weight cutoff, but they couldn’t see any reason she wouldn’t be just fine at home. She passed the carseat test, and home we went.

mcominghomealone

J was still on her feeding tube. I felt more torn as a mother of twins in that moment than I ever did before or since. I was celebrating the health of one of my daughters, but leaving the other alone at the hospital, without even her sister with her. My husband was away for an army training exercise, and I was still recovering from my C-section. Fortunately, my father-in-law was able to stay for 3 weeks, and drove us the 30 miles to the hospital every day so that I could deliver breast milk and steal a few moments with J. I couldn’t stay too long, though, since M was in her carseat in the hospital parking garage with Grampy.

After 5 long, agonizing days, J was ready to come home. It finally felt like my life as a parent could start. My friend just ended 48 days of that waiting, and I hope that her heart can finally begin to heal.

Did you get to bring your babies home at the same time?

Sadia’s daughters, M and J, are still short for their nearly 6 years, but Sadia is short for her nearly 33, so it works out nicely. They guzzle milk, grow, and keep each other busy in El Paso, TX.

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RSV

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Categories Infants, Medical, PrematurityTags , , , , , , , 4 Comments

To parents in the know, there are few acronyms that make one’s heart sink faster than “RSV.”

Respiratory syncytial virus is an everyday virus that gives adults and most children no more than the sniffles. When it comes to young infants, especially preemies, the disease can ravage their lungs, and even prove fatal. I’ve heard that many parents of triplets and more put their infants on complete lock-down to protect them during their first flu season. In order to keep their home RSV-free, they keep family and friends alike away until the weather warms up.

We were fortunate to have health insurance that covered Synagis, the RSV shot, our daughters’ first year. Decision-makers in the military health care system deemed that RSV was a high enough risk for our daughters, 7 weeks premature, to cover the monthly thousand-dollar shot. Every month for 7 months, I took our tiny daughters to the one clinic in Central Texas that carried the antibody shot. They learned to start screaming at the sight of Candy, the lovely nurse who innoculated what seemed to be all the multiples in town.

J and M contracted RSV their second winter. They were relatively sturdy at 18 months of age, and didn’t require hospitalization. Still, I was out of work caring for them for nearly a month. I have documented the rest of the girls’ lives in excruciating detail, but I have no photos or blog posts from that time. Even my memories are minimal, just hazy impressions of fear even deeper than I usually felt during the months my husband was at war. The one clear memory I had was of calling my neighbour Heidi over. She was our only neighbour who was neither elderly nor a parent. I asked her to monitor the girls’ breathing so I could take my first shower in a week; J had thrown up on me. I will never be able to repay her for not only giving me peace of mind during those moments alone under the hot water, but also cleaning J’s vomit off the floor. Her husband was also in Iraq at the time.

M and J continued to suffer aftereffects of RSV for another 3 years. Only recently were we able to permanently (we hope) retire their nebulizer and put breathing treatments behind us.

This week, I learned that a coworker’s 3-month-old was on a ventilator because of complications from RSV. The last update I received was that she had been extubated and is tolerating a nasal cannula. She has been weaned off the meds that were keeping her sedated and is now moving and crying. If all goes well, she should be home from the hospital in a couple of weeks.

What can one say to a parent whose child is in the pediatric intensive care unit? The only words of comfort I had were of sympathy. It seemed out of place to tell her that M and J, after 3 long years, had finally overcome the setback of RSV.

Update, 9:36 am CST

My friend emailed to say, “Good news today!  She’s off of both oxygen and pain meds.  They want to watch her today to ensure that she continues to do all right without them.  If so, we get to go home tomorrow!”

Have you dealt with RSV? Do you have words of comfort for my coworker and her husband?

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The Never Ending Pregnancy

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Categories Birth Stories, Infants, PregnancyTags , , , , 8 Comments

I hardly know where to start with this post…there are so many thoughts swirling around in my head regarding the birth of Jonathan and Faith. But first, I think you need a little background info.

Due to infertility treatments, I knew I was pregnant with two babies almost immediately. And as soon as I could, I got my hands on some “Twin Books” and started reading. And planning. And hoping.

I had a very healthy pregnancy, but it certainly wasn’t pain-free! I had joint pain, nerve pain, growth pain and skin pain. Basically, anything that could hurt, did! But amazingly, it didn’t slow me down too much, until I hit about 31-32 weeks. At a routine ultrasound, the tech thought that she could see my cervix shortening. My OB placed me on modified bed-rest (lay around as much as possible), and so I did my best to comply. Around 34 weeks, the doctor realized that my cervix was strong and not shortening at all, so she lifted my restrictions. Apparently, the tech made a mistake, and I never had had any issues with pre-term labor.

The entire time I was pregnant, I agonized over the method of delivery. Over and over I said, “I just don’t want to do both.” The babies were constantly changing positions, but at 33 weeks, they switched to vertex/vertex. And at 36 weeks, they were back to breech/transverse, with enough fluid to move again. It was driving me CRAZY! I am a planner, and I wanted to just plan what we were doing, and have time to mentally prepare.

At 36w5d, I started having contractions. After a few hours of mild contractions every 5-6 minutes, we went to Triage to be evaluated. By the time we were in triage, hooked up to a bunch of machines (3 monitors, bp cuff and pulse ox) they were every 3 minutes, on the nose! We were getting pretty excited!

I wasn’t in any pain, just uncomfortable. The exams stunk, of course, but the doctors and nurses were all nice. Technically, I was still pre-term, so they gave me a shot of trebutaline to see if it would halt the contractions. It didn’t, but I did feel like I just drank a lot of coffee or finished a hard workout. Very shaky.

Next, I had to drink a liter of water, so see if that would stop the contractions. It didn’t. All of this was to see if I was in actual labor or not. Well, the deciding factor is cervical change, and mine wasn’t! So home we went! It was mentally very discouraging to think I was going to be not-pregnant soon, and then be sent home!

The doctors told me to come back when I was in hard labor or if my water broke. I was so overwhelmed when they told me I would have to go into HARD labor before they would do my c-section (they were still breech/transverse). That just did not seem fair!

Day after day, I plodded along. Even though I couldn’t sleep, and had a lot of pain, I was able to do a lot of things. I was huge and cumbersome, but once I was given the all-clear, I resumed cleaning, laundry and other chores.

Finally, the doctors scheduled my c-section for May 15th, 2007. As 39 weeks pregnant, I walked into the hospital hugely pregnant, and walked out a Mama! I was incredibly nervous about the surgery, but even more so the epidural. I was so nervous, that I couldn’t walk myself to the OR. I was shaking too badly, so they took me in a wheel chair. Once in the OR, any sense of dignity flew out the window. I had already been shaved with a dull razor, and barely had any clothes on. Then I was asked to haul my giant self up onto the table, gown flapping open. The male anesthesiologists prepped me for my spinal, and it wasn’t fun. First of all, they asked me to sit cross-legged on a board the same width as a piece of paper! And on TV, a kind nurse holds your hand/head, but I was on my own. The numbing medicine hurt like hell, and they had to try several times to place the actual spinal. I know I was moaning by the end, but later realized that I had just been a guinea pig for a student doctor.

They laid me down quickly, as I was rapidly losing sensation in my lower half. They pinched me, and I felt it, and then I was totally numb. The next day, I had big bruises and sore spots where they pinched me with their instruments. At this point, they inserted my catheter, prepped my belly and brought my husband in. They started the surgery, and kept the draped close to my face, and didn’t allow my husband to peek. I heard all sorts of things, felt tugging sensations, but was strangely removed from the situation. When they delivered my son, they held him up over the drape, and I shied away from him because he was dripping globs of blood! My daughter was quickly delivered, but I don’t remember seeing her. My husband says they did show her to me. All I remember is hearing the doctor tell the anesthesiologist to start another IV, and I was rather focused on what was happening to me. They asked my husband to leave, and began working on me. I was losing a lot of blood, and my uterus wasn’t clamping down quickly. I heard this strange thud over and over, and I still don’t know what that was. Eventually, the resident finished fixing me up, but told me she wrenched her shoulder as she never had to work that hard to help a uterus clamp down before. My regular OB left before my surgery was completed, as she had to deliver another baby. Before she left, she did say that she though Jonathan and Faith were the biggest twins she had ever delivered at 7.12 and 6.12.

When the OR team was done with me, they asked me if I wanted to hold the kids on the trip to the recovery room. I didn’t even realize they were still with me, I thought they went with my husband. I was vehemently opposed to holding them, as I was totally numb and thought I would drop them! All three of us met up with my hubby and went to recovery. My parents, MIL and aunt were there to meet the babies. They all held the kids before I did, as I was still in shock, couldn’t feel my arms and didn’t feel ready to hold them. I was so focused on the trauma my body had just gone through, that I felt somewhat removed from the situation.

The nurses asked me if I want to try breast feeding, which I did, but we sorta had to prod my family to leave first! The rest of the first day is a blur. I know I felt like crap, wanted to vomit and had hot flashes. I know that I was overwhelmed that I had to start nursing the kids so quickly. After carrying them for 39 weeks, I was ready to share the workload withsomeone else! I was in bed until the next morning, with an IV in each hand and a catheter. I was on Vicodin and motrin once the IV drugs wore off. I had to remember when to ask for them, and that was hard to do. I was able to hold down some liquids the next morning, which meant frequent trips out of bed to the bathroom. There were some near-fainting episodes, but hour by hour, I felt better than the hour before. The very worst after effect of the c-section was the gas pain. My stomach sounded like it was giving off sonar-pings, and the air was moving so strongly that if I placed my hand on my stomach, it felt like there was another full-term baby kicking in there. I actually wondered for a while, if there was a third baby in there!

The kids roomed in with us, but I did send them to the nursery at night. I was so exhausted, and each mew and yawn they would make would keep me up. Unfortunatly, I was too keyed up and uncomfortable to sleep, so when we were discharged on the 3rd day, I was pretty exhausted.

We were so very blessed that our children were so healthy. The never needed oxygen, or intervention of any kind. They had no health concerns, and never left our side. I was intensely aware of how wonderfully the pregnancy and delievery had gone, and every day I am thankful that they are growing up to be strong and healthy children.

The only complication the kids have, is mild developmental dysplasia of the hip. Ironically, this was caused by their extreem lack of space in the womb!

In retrospect, I think I expected to be more emotional about their birth, like the women on TV who cry when they first see their children being born. But for me, I truly think I was in shock, and could only process so much at a time. I fondly look at their newborn pictures and video, and wish I could remember more of those first few days, but on the other hand, I have had a whole year of images and moments to fill my heart to overflowing. The birth was just the starting point of our lives together, and what a good life it is.

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